Oxford Handbook of Paediatrics (2 edn)
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Ethics
The development of ethical frameworks has a history as long as medicine itself. Today, ethical traditions can be broadly categorized into three traditions:
virtue ethics;
deontology;
consequentialism.
More recently, principlism has been proposed as a unifying approach.
‘Virtue ethics’
Often associated with the tradition of Aristotle and emphasizes the character and moral behaviour of the person or agent. Aristotle proposed nine key virtues: wisdom; prudence; justice; fortitude; courage; liberality; magnificence; magnanimity and temperance.
‘Deontology’
Most commonly associated with Immanuel Kant who formulated the concept of the categorical imperative. The tradition emphasizes individual dignity, truth telling, non-maleficence, beneficence, and autonomy. The good will and motive of the individual determine the rightness of the act.
‘Consequentialism’
In contrast to deontology, emphasizes that the rightness of an action is determined by its consequences. The tradition is often associated most with the utilitarians such as Jeremy Bentham.
‘Principlism’
Traces its origins to the Nuremberg Code (1948), the Declaration of Helsinki (1964), and the Belmont Report (1979) all of which focus on research on human subjects. Beauchamp and Childress have championed moral decision-making in medicine based on principlism emphasizing four moral attributes: autonomy, non-maleficence, beneficence, and justice.
Common law
In England, the United States, Canada, Australia, India, and many other countries the law has mainly developed from judges through case law or precedent, rather than statute or executive action. This system is known as ‘common law’. In an idealized form, common law should mean similar cases are decided consistently and that the law will evolve when new circumstances require precedent to be created. Difficulties can present when two or more precedents suggest conflicting courses of action.
We all function within the legal framework of the state in which we live, and we will also have our own personal ethical views and ideas. All of these will have an impact on the way that doctors relate to their patients, colleagues, and everybody else with whom they interact in their professional lives. As a paediatrician you will need to do the following:
Identify the legal and ethical problems involving patients that clinicians face most frequently. When might one anticipate the circumstances in which clinicians may require particular care in deciding a course of action?
Identify clearly the clinicians’ obligations in each case. What duties does a clinician have when faced with a moral or ethical problem that affects the care for a patient?
Bring expert guidance, wisdom and precedent in complex situations. What resources can clinicians use to try to resolve legal and ethical problems effectively so that the care of the patient can be continued or altered appropriately?
Recognition of ethical issues in everyday clinical practice
The key areas and issues that arise frequently in paediatric practice are summarized in Box 31.1.
Age and Gillick/Fraser competence
Parental consent or refusal
Proxy consent
Refusal of treatment
Insistence on treatment
(
p.1040)
Aggressive treatment
Resuscitation and do-not-resuscitate orders
Refusal of treatment by doctors
Cultural factors (e.g. circumcision, blood transfusion in Jehovah’s Witness)
( p.1038)
p.1040)Resuscitation
Withholding and withdrawing treatment and end-of-life decisions
( p.1042)
Duties of the doctor and breaching confidentiality
Conflicts of interest: general practitioner’s duties to the family
Clinical case study
During clinical practice, as a postgraduate trainee or an undergraduate medical student, there are many opportunities to consider some of the common ethical and legal issues at the core of paediatrics and child health. In order to help with consolidating this aspect of your learning we suggest that you undertake this clinical case study. First, identify a case that has caused you to think. There are then 4 steps. In the first two you note your initial thoughts. Step 3 is completed after a case discussion conference with your team and other learners. Step 4 is for your reflection. Write down a summary of each step—it will help to clarify your thoughts and you shouldn’t need more than 250 words for each of the sections in Box 31.2.
Describe the key issues in your patient or scenario:
The medical facts?
Contextual factors?
The patient’s capacity?
The child’s preferences?
Surrogate decision makers?
Competing interests?
What problems are posed by the case or scenario?
What options were there for resolution?
After you have had an opportunity to discuss steps 1 and 2 in a group:
Write down what you discussed in the group
Was there an answer or resolution to the problem?
How was this achieved and what options or interventions were considered?
How was the matter dealt with?
Comment on whether the plan of action worked
In retrospect, do you think the problem could have been avoided or improved, etc.?
The doctor–child relationship
Involving children in decision-making about their own care presents some problems. The law in England is not clear and relies on the clinician exercising clinical judgment. In general, consider:
Doctors should act in partnership with children whenever possible.
The Children Act (1989) states that children’s views should be heard.
The United Nations Convention on the Rights of the Child indicates that clinicians should give ‘due weight to the views of the child according to age and maturity’.
The Children Act 1989
The legal framework within which action takes place to safeguard children. The key principles of this act include:
The welfare of the child is paramount.
Children are best brought up in their own home and agencies should seek to work in partnership with parents.
The social services authority has a duty to investigate the circumstances of individual children where there are reasonable grounds to believe that the child is at risk of suffering or suffers ‘significant hardship’.
Note the following:
‘Harm’ is defined as ill-treatment (i.e. all forms of abuse) or impairment of health or development.
‘Significant’ is not defined in the Act, but means considerable, noteworthy, or important.
The Children Act 1989 was added to in The Children Act 2004 which gave legal underpinning to ‘Every Child Matters: Change for Children’ (2004) and meant that from April 2006, education and social care services for children have been brought together under a director of children’s services in each local authority.
Closely linked to the Children Act are:
Protection of Children Act 1999.
Safeguarding Vulnerable Groups Act 2006.
The Children and Young Person Act 2008.
The Human Rights Act 1998
Public authorities must act consistently with the European Convention on Human Rights. Most relevant are the following.
Article 2: The right to life.
Article 8: The right to respect for private and family life.
Article 5: The right to liberty and security of person.
Article 3: That no one shall be subjected to torture or inhuman or degrading treatment or punishment.
Parental responsibility
This is defined as ‘all the rights, duties, powers, responsibilities, and authority which by law a parent has in relation to the child and his property’.
Parental responsibility (PResp) is allocated as follows.
PResp is automatically given to the mother.
The father has PResp if:
he and mother were married at the child’s birth;
unmarried, but name registered on birth certificate (after December 2003);
unmarried and entered into a PResp agreement with the mother;
unmarried and obtained a court order for PResp;
unmarried and obtained a Residence Order.
In addition unmarried fathers can acquire PResp by marrying the child’s mother.
Parents cannot lose PResp unless the child is freed for adoption (or awarded to local authority as part of EPO or care order).
The doctor–parent relationship
Most professionals do not have any difficulty with the idea that competent adult patients should be involved in their treatment. In the case of children, their parents are the proxy decision-makers. In this regard, the following must be considered.
All doctors have a duty to act in the best interests of their patients. In the UK the General Medical Council requires this standard from medical practitioners.
Parents have the right to make decisions about a procedure on behalf of their child.
Parents do not have the right to insist on a doctor doing something that they do not consider to be in the child’s best interest. Given this responsibility, there will be times when a doctor may be forced to act against the parents in the interests of a child.
Assent and consent
In the USA, the term ‘assent’ in a child is used to distinguish valid ‘consent’ from a competent adult. The American Academy of Pediatrics suggests that assent should include at least the following elements:
Helping the patient achieve a developmentally appropriate awareness: of the nature of his or her condition.
Telling the patient what to expect: with tests and treatment.
Making a clinical assessment of the patient’s understanding of the situation: the factors influencing how he or she is responding (including whether there is inappropriate pressure to accept testing or therapy).
Soliciting an expression of the patient’s willingness to accept the proposed care: do not solicit a patient’s view without intending to weigh it seriously. Where the patient will have to receive medical care in spite of his/her objection, tell the patient that fact. Do not deceive them.
The American Academy of Pediatrics suggests that clinicians seek the assent of the school-age patient as well as informed permission of the parent for procedures such as:
Venepuncture for diagnostic study in a 9-yr-old;
Orthopaedic surgery device for scoliosis in an 11-yr-old.
With regard to consent, the clinician must present information in a manner suited to the child’s developmental level. Parents should be able to assist, but in some cases they may be too close to the situation to assess the child’s state accurately. Other professionals can provide important insight into a particular child’s developmental level and comprehension of the information presented. In the process of consent, the child’s situation influences each of these elements:
Nature and the purpose of the therapy.
Risk and consequences of therapy, and of not having therapy.
Benefits and the probability that therapy will be successful.
Feasible alternatives.
Consent
In the UK, consent must be sufficiently informed and freely given by the designated person who is competent to do so. (See also p.1037).
The adolescent if aged >16yrs.
The adolescent if aged <16yrs and judged to be competent.
Parents.
Individual or local authority with parental responsibility.
A court.
Competence
Defining whether an adolescent demonstrates competence can be difficult and may depend on the nature of the procedure, as well as the child. The adolescent must possess qualities associated with self-determination and self-identity, appropriate cognitive abilities, and the ability to rationalize and reason hypothetically. Understanding, intelligence, and experience are also important qualities that may determine competence.
Criteria for establishing competence
The patient must:
Demonstrate an understanding of the nature, purpose, and necessity of the proposed therapy.
Demonstrate and understanding of the benefits, risks, and potential consequences of not having the treatment.
Understand that this information applies to him/her.
Retain and use that information to make decision.
Ensure their decision is made without being pressurized.
Assessing competence is the legal responsibility of the patient’s doctor or other designated health care professional. A patient’s refusal to co-operate with competence assessment should not be regarded as demonstrating incompetence. In England, Wales, and Northern Ireland adolescents aged 16–18yrs can consent to treatment, but cannot refuse treatment that is otherwise intended to prevent their serious harm or death. Adolescents aged less than 16yrs may legally consent to treatment if they fulfill the criteria for competence. In Scotland, all children and adolescents may consent to treatment irrespective of age, so long as they are deemed competent to do so.
Confidentiality and disclosure
When should you tell the whole truth? What if you make a mistake? What do you say to the team? What will you say to the family? Will you disclose your error? Will you say you are sorry? How will you handle this in terms of your personal feelings? How will you feel about yourself? These are questions we all have to think about—whatever our level of seniority and whatever field of practice. The General Medical Council provides guiding principles and responsibilities of the doctor in these situations. It should be remembered that deception or flawed disclosure may take many forms, e.g. presenting ‘just the facts’, or saying ‘there’s always hope’, or thinking that ‘you can’t tell a patient everything’, or omission, or evasion.
Confidentiality in regard to patients
In adolescent practice, the issue of confidentiality arises when the young person presents for certain types of advice or treatment (e.g. contraception, abortion, STIs, substance misuse, mental health issues, and family problems).
The duty of confidentiality owed to a person under 16 is the same as that owed to any other person.
It is not absolute and may be breached where there is risk to the health, safety, or welfare of the young person or others.
Disclosure should only take place after consulting the young person.
The personal beliefs of a practitioner should not prejudice the care offered to a young person.
Objections to disclosure of information should be respected, although in certain situations disclosure may be required by law for the purposes of protecting the adolescent or others from significant harm.
Breach of confidentiality and disclosure of information
It may be proven legal to breach confidentiality in the following situations:
Incompetent individual: any situation in which there is a risk of harm to the adolescent or to others.
Competent individual:
history of current or past sexual abuse;
history of current or recent suicidal thoughts or self-harm behaviour;
homicidal intentions;
where serious harm to the individual is likely to occur.
The patient should always be informed that the information will be disclosed and the reason why. Attempts should be made to encourage the patient to agree to disclosure. Legal guidance from professional bodies or from medico-legal services may need to be sought.
Confidentiality and disclosure of medical information to other agencies
Improving children’s well-being is dependent on agencies being able to share relevant information about them. The general rule is to seek consent to share information unless you believe it is contrary to the child’s welfare. It is the parents (or whoever has parental responsibility) who can give consent.
In UK law, the parental right to determine whether a child <16yrs has medical treatment terminates if and when the child achieves sufficient understanding and intelligence to understand fully what is proposed. In practice, a young person <16yrs of age can consent to treatment, but if they refuse it, parents may override their decision. This is termed Fraser or Gillick competence ( p.1007). Whether an adolescent is Fraser competent depends on the complexity of their medical needs as well as their emotional maturity and intellect.
Disclosing personal information and medical information about a child to other professionals (teachers, social worker, police, other health professionals) is not a problem if consent is given but should be proportionate.
Judgement needs to be exercised and very personal medical information should only be shared if relevant and necessary to promote the child’s well-being.
Medical and other sensitive information about parents needs their permission to divulge. Only share relevant facts when needed.
If consent is not given then it can be justified if:
there are very good reasons to do so (see Chapter 28); or
it is in the public interest.
Whatever decision is made this must be in keeping with the Data Protection Act, the Human Rights Act, and the common law duty of confidence and also guidance from the General Medical Council (UK).
Withholding or withdrawing treatment in children
There are medical situations where the treatments used to try to keep a child alive will neither restore them to health, nor provide them any other meaningful benefit. In these circumstances treatments such as mechanical ventilation, heart pumps, etc., may no longer be in the child’s best interests.
Ethical framework
Duty of care and the partnership of care: our duty as part of the health care team is to comfort and to cherish our patient, the child, and to prevent them experiencing pain and suffering. We undertake this in partnership with the child’s parents or carers.
Legal duty: all health care professionals are bound to fulfill their duty within the framework of the law. Any practice or treatment given with the intention of causing death is unlawful.
Respect for children’s rights: our treatments for children should have ‘their best interests’ as a p consideration.
Double effect
It is recognized in English and Scottish law that, e.g. increasing doses of analgesia, necessary for the control of pain or distress, may shorten life. We use opiates for the benefit of the child during life and we do not use them to cause or hasten death, but this may be a consequence—the double effect. The principle has four frequently cited conditions:
The action must be either morally good or neutral.
The bad effect must not be the means by which the doctor achieves the good.
The intention of the doctor must be the good effect.
The good effect must be equivalent or greater than the bad.
Euthanasia
Withholding or withdrawal of treatments, such as ventilation often does not lead to death. It should be clear that active measures to shorten life are not appropriate or legal and that palliative care is to be continued.
Process of decision-making
Making a decision about withholding or withdrawing life-sustaining treatment requires time. It is advisable that the whole team is involved, and enough information and evidence about the child’s condition is available. The decision to withhold or withdraw life-sustaining therapy should always go hand in hand with planning palliative care needs.
Process: while decisions are being made the child’s life should be safeguarded in the best way possible.
Responsibility: the clinical team carries the corporate moral responsibility for decision-making. The senior member of the team is the consultant in charge of the child’s care and should lead the decision-making process: s/he bears the final responsibility for the chosen course of action.
Family and parents: the final decision about withdrawal of treatment is made with the consent of the parents. Good communication is essential, as is building a relationship based on trust.
Second opinions: it is good practice to consider this option. Other consultants working within the team may have advice. However, additional input from experts in another hospital may be required. This is particularly useful in unusual circumstances where there is uncertainty about prognosis and the child’s likely future impairments.
Legal input: with time, effective communication, and support, the decision-making process in most cases can be brought to a resolution. There are instances where hospital legal advisers and court involvement are required, especially where there is disagreement between parents or parents and the medical team involved about the right way to proceed.
Professional framework
See ‘Witholding or withdrawing treatment in children’, May 2004, 
www.bapm.org/publications/document/guidelines/Withholding&withdrawing_treatment.pdf
Brain death: mechanical ventilation in such circumstances, where specific criteria are met, is futile and the withdrawal of ICU treatment is appropriate
Permanent vegetative state: this state, which has specific diagnostic criteria, follows brain insults such as trauma and hypoxia. It may be appropriate to withdraw or withhold life-sustaining treatment
No chance: the child has such severe disease that life-sustaining treatment simply delays death without significant alleviation of suffering. Treatment to sustain life is inappropriate
No purpose: the child may be able to survive with treatment, but the degree of physical or mental impairment will be so great that it is unreasonable to expect them to bear it
Unbearable: the child or family feel that, in the face of progressive and irreversible illness, further treatment is more than can be borne. They wish to have a particular treatment withdrawn or to refuse further treatment irrespective of the medical opinion that it may be of some benefit
Where there is disagreement, or where there is uncertainty over the degree of future impairment, the RCPCH advises that the child’s life should always be safeguarded until these issues are resolved.
Good ethical and legal practice in suspected child abuse
A full account of the reporting of child abuse is given in
Reporting: as soon as abuse is suspected it is important to share this information with other clinicians and social services and police.
Parents and carers have parental responsibility for their children. Share your concerns and course of action with them as far as is safe for the child.
Criminal proceedings
Crown prosecution service decides whether to bring a criminal case.
Burden of proof needed is ‘beyond all reasonable doubt’.
No hearsay evidence is permissible.
Magistrates Court or Crown Court.
Civil proceedings
Burden of proof needed is ‘on balance of probability’.
Magistrates Court, County Court, or High Court.
Divorce and other civil matters included as well as child abuse.
Court orders (Children Act 1989)
Police Protection Order
Application: by the police in case of emergency.
Duration: maximum 72hr.
Child removed to suitable accommodation or prevention of removal from a current location of safety (e.g. hospital ward).
Emergency Protection Order
Duration: 8 days, but can be extended for a period of 7 days on one occasion only.
Application: by anyone but usually by social services.
Child Assessment Order
Implemented when parents are uncooperative. In practice little used and not if there are grounds for an emergency protection order.
Duration: 7 days.
Application: by an authorized person, usually the local authority.
Interim Care Order
Duration: maximum 8wks.
Application: by the local authority usually (or NSPCC).
Gives parental responsibility to the local authority (i.e. social services).
Supervision orders
Duration: 12mths in the first instance.
Application: by social services or NSPCC.
Note: The courts have powers to authorize or prohibit medical examination of a child at the time the order is made or during the course of the order.
Serious case reviews
Following ‘Working Together to Safeguard Children 2006’ serious case reviews are commissioned in cases where a child dies or sustains serious injuries, and abuse or neglect is known or suspected to be a factor. They were previously referred to as ‘Part 8 reviews’ as defined in section 8 of ‘Working Together to Safeguard Children’ (Department of Health, 1999).1
The purpose of serious case reviews is to:
Establish lessons to be learnt about the way in which local professionals and organisations work together to safeguard and promote the welfare of children.
Identify what those lessons are, how they will be acted on, and what is expected to change as a result.
Improve inter-agency working and better safeguard and promote the welfare of children.
Reference
Legal aspects of international adoption
The Adoption and Children Act 2002 and the Family Procedure (Adoption) Rules 2005 have comprehensively reformed the law on adoption. A new process called ‘placement’ has replaced the process of ‘freeing for adoption’. The following notes cover some basic information for UK citizens wishing to bring an adopted child from another country.
In general anyone over 21 can legally adopt a child.
The UK does not have a statutory upper age limit, but each local authority has the power to determine if a prospective adoptive parent is above its acceptable age limit.
Married couples must adopt ‘jointly’, unless one partner cannot be found, is incapable of making an application, or if a separation is likely to be permanent.
Unmarried couples may not adopt ‘jointly’, although one partner in that couple may adopt.
UK requirements for adoption
It is a criminal offence if a parent adopts a child overseas with the intention of bringing the child to the UK without having been approved.
A person must be approved for adoption by their local social services department before a child can be identified.
A detailed ‘home study’ will be conducted by local social services or an ‘approved adoption society’. A list of approved societies can be obtained from the British Association for Adoption and Fostering ( www.baaf.org.uk).
A medical clearance and full police background check are also required.
Once the approval for adoption has been granted, the prospective parent(s) should then contact the following departments for advice: the UK Border Agency—Inter-country adoption and immigration rules ( www.bia.homeoffice.gov.uk/sitecontent/documents/residency/intercountryadoption.pdf
The prospective parent(s) must also apply to the nearest British Embassy or Consulate to obtain clearance for the child to enter the UK. The Home Office Immigration service has an information package (RON117) that explains the procedures.
The UK has now ratified the Hague Convention on Protection of Children and Co-operation in respect of Intercountry Adoption 1993. This means that, in many cases, provided an adoption order is obtained in the child’s country of origin, it will not be necessary for the applicant to obtain an order in the UK as well. However, where the child’s country of origin has not ratified the Hague Convention, the procedures are more stringent. Applications for adoption in the UK are still necessary and may be transferred to the High Court.
Medical care
There is now a growing literature on the medical problems encountered by some internationally adopted children, albeit in predominantly US journals.
It should be remembered that many internationally adopted children have come from institutions in countries with many endemic diseases. In the USA, international adopted children have been reported to have the following conditions identified on arrival:
Hepatitis B.
Intestinal parasites.
Tuberculosis.
Congenital syphilis.
Anaemia
Lead poisoning.
Deficient immunization.
Emotional and behavioural problems.
Unsuspected medical problems.
Developmental delay.
Microcephaly.
In some instances, parents now consult an expert in adoption-medicine to review the information given by the adoption agency. The American Academy of Pediatrics has recommendations on pre-adoption review and screening on arrival. The pre-adoption review will include the following:
The specialist should be able to advise on the medical summary, the risk of foetal alcohol syndrome, and explain the meaning of Russian diagnoses, such as ‘perinatal encephalopathy’, ‘hypertensive–hydrocephalic syndrome’, and ‘pyramidal insufficiency’.
Assessment of growth and development charts, and any photographs and videos.
Once the child has arrived, it is advisable to document the adequacy of immunity gained from any immunizations. In addition to considering and testing for the diseases noted above, the child will require testing for the following infections on arrival and 4–6mths later.
Hepatitis B.
Hepatitis C.
HIV (note that very few internationally adopted children arrive with this infection).
Last, the adoptive parents should consider long-term developmental follow-up.
